#ParentPower or #ParentDisempowerment what’s our choice?

8/2/19

I had a teacher, Miss Jones who taught me in Brynhyfryd Junior School, she exuded energy, wisdom and passion, and seemed to dance lightly around the classroom, it was exactly how Pooky appeared on Monday morning as I sheepishly crept in late (due to a fire that had disrupted the tube lines) to a meeting near London Bridge. Dr Pooky Knightsmith (@PookyH) along with Joanna Goodrich (@goodrichjoanna @pointofcareFdn) were feeding back on work commissioned by the patient insight team at NHS England (@Clareenston @RuthElizHudson et al) on how we should gather experiences of children, young people and families using mental health services.

Rightly there was lots of direction on how we could better hear and action the experiences of children and young people, but for these reflections I’m going to focus on the role of parents.

The power of parents has continued to amplify since 1961 when a group of mums from Battersea set up ‘Mother Care for Children in Hospital’ to ensure recommendations in the ‘welfare of children in hospital’ ie the Platt Report (which recognised the importance of parents and that visiting/staying with their child should be unrestricted) were universally adopted in all hospitals http://www.actionforsickchildren.org/history/. Other powerful parent lobbyists such as the National Network for Parent Carer Forums @NNPCF have led important policy change for children with Special Educational Needs and Disabilities (SEND) and @WellChildFams shared the care they provide for their children in the phenomenal @NotaNurse_but campaign which captured the attention of other parents, healthcare professionals and commissioners alike are more contemporary examples of real change-makers.

The spotlight on this current work is with parents who have children with mental health needs. Pooky heard of their frustration, comments shared indicated that they were terrified of ‘making a fuss’ in case that had an impact on their child’s care, they felt professionals held the power, that they were kept in the dark and importantly were an under-utilised resource in their child’s care.

These comments are reinforced in the report commissioned from the Association of Young People’s health (@AYPHCharity) http://www.youngpeopleshealth.org.uk/wp-content/uploads/2016/11/AYPH-Parenting-briefing-11-nov-2016.pdf please do dip in, some of the asks from children to involve parents more are powerful.

Then Friday this week took me to Liverpool to the first national parent conference, organised by ‘Fresh Plus’ (@FreshPlusGroup) the parents/carers of children and young people using mental health services at @Alderhey https://www.liverpoolcamhs.com Parents and professionals from across the country attended, and it was rightly articulated that whilst many more parents wanted to attend they were just too scared to leave their child reinforcing the physical, emotional and financial strain experienced by families.

You can catch up on the highlights of the conference by taking a look at #ProudParent2019. One parent shared ‘I am a Proud Parent, my daughter is 21 now, when she was 14 we didn’t think she’d see 21, she’s made it’. We also heard from siblings asking us not to forget them too.

Parents clearly want to be partners in care, they want guidance, education and training programmes. The @CharlieWtrust has the most wonderful resources for families https://www.cwmt.org.uk/resources please do take a look and share them. Parents also want to tell us what’s working, what isn’t and to share ideas for improvement, yet professionals need to be open and responsive to this feedback and we don’t always create the right culture for parents to do this.

Support for parents is vital either from professionals or peers, to quote Pooky ‘parents are the children’s chief cheerleaders, who are parent’s cheerleaders?’

Are we as professionals involving parents actively/therapeutically in care, valuing and supporting their contribution and providing mechanisms for their feedback, let alone involving them in the commissioning and design of services?

One parent said ‘I don’t need to know everything, of course my child has a right to privacy, but I have a right as a parent to guidance, support so that I can help and do the right stuff’

The conference in Liverpool stated it’s time for #FreshThinking….

Post blog publication:

Mary Busk @marybusk has flagged the #AskListenDo work https://www.england.nhs.uk/learning-disabilities/about/ask-listen-do/ which a really practical way of gathering views from families and then importantly taking action.

Luci Butler @butler_luci asked for #FreshThinking about transitioning from CAMHS to AMHS …

Wondering if Avrind’s #ReadySteadyGoHello work in Southampton would add a more structured proactive approach to transition?

http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx

Great to see discussion about these issues online, thanks to Steph for her reflections …

Writing to #patients?

3/2/19

I had the pleasure this week of joining the amazing Dr Arvind Nagra (do follow her on Twitter @arvnagra) at a great study day at Southampton entitled #Movingonup

We focused on moving from children’s services into adult care. There were great presentations that stimulated lively debate, yet one really challenged me, @CharlieTomson asked ‘are we writing directly to patients & copying in GPs?’

Despite guidance from Association of Medical Royal Colleges http://www.aomrc.org.uk/wp-content/uploads/2018/09/Please_write_to_me_Guidance_010918.pdf it’s not happening routinely. Charlie (only his mum calls him Charles) outlined his approach, an understandable summary along with actions for the patient, GP and other relevant people, followed by next steps (see the simple template below from Charlie).

Twitter engaged with the conversation and @LiviBF summed up the impact of being written to beautifully ….

What do you think? Should we make writing to patients an #AlwaysEvent https://www.england.nhs.uk/always-events/

This great blog by @ChrisGrahamUK CEO at @pickereurope explores this further, thx Chris!

https://www.picker.org/news/blog/why-respecting-a-patient-by-writing-to-them-and-not-about-them-is-so-important/